About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, December 10, 2011

Hi Everyone! Hoping y'all are doing well and getting excited about the holiday season! I've been thinking about all of you and I thank you for all your prayer, love and support! I have returned to work this past week and it feels great to be functioning in a somewhat regular manner! Unfortunately, there are still a few issues to deal with - don't know why I still get a very upset stomach - the Imodium isn't helping as much as I wish it were!

I've been going to wound care @ Dr.'s Regional Hospital 3 times a week and they are doing a great job! I know it sounds terrible, but I have this "hole" on the left side of my face that probably came about like 4 or 5 embolizations ago, where maybe Dr. Yakes got a little aggressive w/the alcohol! Plus, a couple of embolizations ago, I ended up w/some black "scabbing" that needs wound care so it will eventually come off and to keep clean. It isn't actually a "scab", but no one wants that area to bleed, so they are very careful when cleaning it. Ugh. Now I walk around with gauze covering the area to @ least try and keep the elements from it! Speaking of that - remember I told you that Dr. Boynton took a culture of the wound area? Well it came back negative from that pseudomonis infection!!! Yay! Course he told me it won't be my last infection either! WHAT? I've already had several infections and it is not fun! Between the fact that I had my wound uncovered for a while and was not getting any wound care .... and I'm always on steroids, and that lowers your immune system...! Anyway, I'm feeling much better! I remember when I first got back from CO this past emboization, and I was in bed, it was exhausting just trying to scooch myself back against the pillows! At this point, once I get home from work, I head straight to bed! I used to come home and watch my Soaps that were recorded on the dvr - but no more! I can't wait to get in my jammies and get in bed w/my nook and Hanz & Bella usually join me!

Guess what? I'm a bit behind on blogging due to the many avm events. Happy New Year! Hope everyone had a safe and happy holiday season! We all met @ Mom's for Christmas Eve and had a delicious meal of ham with all the trimmings! Opened gifts and the Fossums headed to Midnight Mass! By 2:00 a.m. I was feeling miserable and packed a suitcase and had Mark admit me to Dr.'s Regional Hospital - 3 blocks from our home! I was already hurting so bad from having fallen asleep slumped over and bruised a muscle on my side - it hurt so bad just to breathe! I was admitted with dehydration, exhaustion and guess what? Another pseudomonous infection! Yikes! That was very disappointing, but it seems my PCP feels that my always being on steroids brings them on! To boot, he said it would be 2 weeks before my bruised muscle would feel better. Are we having fun yet? I was in the hospital several days and very grateful my family came to visit often! My poor Mark worked, would go home feed the kiddos and then come see me awhile! I missed my babies soooo much! The doctor on call when I was admitted right away put in an order for a hospital bed for me @ home! Yay! No more sliding down the pillows or slumping over asleep! In a way when I walk in the bedroom and see that bed it makes me sad and angry. In another way, I'm very happy because I've actually gotten some decent rest - finally!!! Please everyone, be grateful for your health! Never mind bad traffic, that darned hangnail or whatever you stepped in (ha, ha) - be present in yourself, take a deep breath and appreciate your body if you feel well!

I was still not feeling well when I was released, but was anxious to get home - didn't even have the energy to read, and y'all know how much I love that! By the following day I was feeling better and Dr. Boynton finally prescribed a pill to stop the runs! Hijole!

My brother-in-law Greg invited my Mark as a birthday gift, to go way out on a fishing trip, and our nephew Davis went along too! This was part of Marks birthday gift - as he celebrates his 52nd New Years Eve! My poor honey, I couldn't do much for him in the state I was in. I sometimes wonder if I'll ever be well again, and I dream of that day and I'll make it up to Mark! I can't wait to wear make-up again and put on a nice dress and heels, instead of living in jammies and Crocs! Anyway, Mom was nice enough to call me and ask if I wanted something to eat, so she dropped off some taquitos. I had just started to eat, when I saw a trickle of blood running down my mouth. Dang! I put the food away so Hanz and Bella couldn't get to it, then hurridly called Mom on her cell phone to tell her I was bleeding! I knew Celia was busy and it was too far for her to drive from the island, and of course Mark was way out somewhere fishing, so Mom got the call. She came over and luckily it wasn't the worst of bleeds, but it wasn't minor either. I was starving too, but afraid to eat anything! I was resting later that day in bed, when I had to hack and from the force of that, guess what? Yup, started bleeding again. Luckily, by this time Mark was home! We were able to get that under control well enough w/out too, too big of a mess, but I was still so hungry! Didn't eat anything, slept through the New Year and finally got up this morning and tried to eat a little something. Mark is trying to get some rest, also has given the kiddos haircuts and is doing wash! The fridge needs to be cleaned, it never ends does it? Oh well. I'll be home this next week - still on IV Antibiotics twice a day to kill that stupid, stupid pseudomonous infection! Nurses on Wheels comes by to clean the pic site or give us supplies or take blood samples. Not much else going on 'round here. Not sure what my next move will be. I originally had an appt. to go back to Denver Jan. 10-12 or so, but in a way, I want to wait another week or two to give my body a rest from the steroids I have to be on after a procedure! On the other hand, if I've already had a couple of bleeds, is the avm growing - we don't want it to get ahead of us! I just know I'm going to go through a lot of hell before all this gets better. Please pray that I have the strength to endure the entire process w/out going crazy or driving anyone else crazy! Love to all!

Cyndi

P.S. I just wanted to add how much I enjoyed watching The Sound of Music the other day on TV! Wasn't Christopher Plummer handsome? Both he and Julie Andrews are such good actors, you feel they are really in love! My favorite scenes are when they dance out on the patio during the ball and when they are singing out in the gazebo.